Day +209 Clinic and Make a Wish.........

Today Ariauna is day +209 post transplant and she had a very busy, but fun day. Today is also St. Patricks Day, so lots of green to be seen. We started our morning off bright and early getting the other kids to school and Jaxon off to hang out with Grandma and Pops. We got to clinic at Primary Children's Hospital and got Ariauna all checked in.

This place was crazy busy today, the waiting room was full. Ariauna made a cute dinosaur out of a paper plate for Jaxon while we waited. They finally had a room open and called us back. They did all of Ariauna's stats and she had gained some weight, yay! She is back up to 53.46 pds, this is about what she was while on her feeding tube and they want her to be right about 53 pds.Shortly after getting in a room, the nurse came in to draw her labs and we had to remind her that she does not have her Hickman line anymore. So then they call in the phlebodemist to come and do it. When they came in they actually were all decked out in their St. Patty Day stuff and offered to put a tattoo on Ariauna. So here is Ariauna with her new tattoo.

Her blood work all came back in the normal ranges, yipee! Her WBC is 6.6, HGB 13.1, Platelets 219 and her ANC is 2.4.  We talked about her anti-rejection medicine and that she is now down to 0.8 ml and so far is doing well. They checked her skin and her mouth for signs of GVHD. She is still having some eczema issues but that is very normal in cord blood transplants and today they told me that it usually lasts a couple of years and then will hopefully go away. As long as it stays as eczema and does not turn into GVHD, I will be happy. We also talked about her lipid levels and how they were out of wack at her 6 month check up. This is something they do not check until 6 months and they said it is very common to have the high numbers for people who are on the Sirolomus (Rapamune) anti-rejection drug that Ariauna is on. The BMT doctor here at home said they could put her on some medication to help (Cholesterol) but they will wait and retest her after she is completely off her anti-rejection medicine. Most of the time it is just the drug doing it. So hopefully that is the case. We do not want to have to start another medicine. Everything else was good at clinic and we just need to check in again in two weeks. Yipee!!  This next picture is just kind of a fun one that I have taken every time we go to clinic. I know it is not that exciting to see me, but it has been fun to look back at how much Ariauna has changed each time we go. It shows how much more hair she is growing and how much healthier she is looking.

We went and picked Jaxon up from Grandma and Pops house and took him home to get a nap before Ariauna's special night at the "Wishing Place".  Here Ariauna is right as we got to the Make a Wish building. She is so excited she can hardly stand it.

We were greeted at the door by our Make a Wish granters Bob and Mary Chamberlain as well as Meg from the Make a Wish office. There was a special sign to greet Ariauna!

They took us in to a room that they had a princess table all set up for Ariauna, they had snacks and drinks ready to serve to our family. We set our belongings down and then they took us on a tour of the building. They told us how Make a Wish started in 1980 when a seven year old boy in Phoenix, Arizona was diagnosed with leukemia, he inspired the founding of Make-A-Wish Foundation. He wanted to be a police officer. A group of officers from the Arizona Department of Public Safety granted his wish by giving him a custom-made uniform, helmet, badge and even a helicopter ride. The young boy's delight in having his wish granted inspired the group to form an organization that would grant special wishes of other children. The Utah chapter was incorporated in 1985. It was the 42nd chapter in the network and serves the entire state of Utah. Today there are 75 chapters and 25 international affiliates. The Utah chapter expects to fill 150 wishes this year. They have granted over 2,000 wishes since the chapter's inception. Next they showed us the stars up on the ceiling right as you walk in the main doors. Every star that hangs represents a child in Utah who has had their wish granted to them.

It is beautiful in person, they all sparkle and shine. And when you know the meaning behind them, it makes them that much more beautiful. Ariauna is super excited, after her wish is granted to her, she will get to go back to the Make a Wish building for a "Star Raising" party where she will get to invite 60 people who are important to her to come and watch her Star be raised with all of the other stars.  Next they showed us the board of Wishes they are currently working on here in Utah. The Utah chapter currently grants approximately 150 wishes a year. The children on this board are children that Make a Wish is working on making their wish come true.

I am sure in the next day or two, Ariauna's picture and her wish will be on this board. There were numerous different wishes. Several wanting to go to Disney World, Disneyland, Hawaii, one who wanted to go skiing with some famous person, several wanting to go on a shopping spree where they rent a limo for you and your family and you get four hours with a BIG check of money  to go shopping for pretty much anything you want, there was one little boy who wanted to be a zoo keeper so they took him to a famous zoo and they got a picture of him sitting on the legs of an elephant which he had bathed, another boy wanted a new play ground. It all depended on them and their situation, some children are unable to travel so they chose other things. Then it was time to go in and mix and mingle. Even though our Fanconi Anemia doctor turned Ariauna in to receive a wish there was still a lot of paperwork to fill out about our family. While we were doing that, they were serving the kids popcorn, cookies and drinks. They played a game with the kids to see how well they knew Ariauna and her favorites. They did pretty good! Then they gave each one of the kids a gift bag to open. They had gotten each one of the kids something fun. Ariauna's sack had a Make a Wish Barbie, a make a wish t-shirt, 2 king size kit kats, 2 cookies n cream candy bars, a tiara, some 3D fabric paint with a t-shirt to make her own t-shirt, rainbow loom elasics, note cards , a TY pig beanie baby and a mini bunny.  She was super excited!

Austin got a new backpack with some snacks in it and a new deck of cards.

Sadie got a new package of Monster High doll stuff and a cute little stuffed bunny. She felt pretty special that even though this Make a Wish is for Ariauna, they are still including her.

Little Jaxon was not left out either, he got a new big teddy bear and a big package of cars. That totally made his night!

I convinced our Wish Granters and Meg to join the kids and Jerry for a group photo before moving upstairs.

Then they took us upstairs to play the Wishing Quest Game. The kids all got to play and it is a game where you go around the board and it asks you all sorts of questions about wishes. There are four main stars you had to stop and and they would ask the four important questions that Ariauna needs to answer tonight. So they got started with the game. While the kids were playing the game, Mary was taking good notes as to what Ariauna's wishes would be.. Meg was really good with all of the kids and made sure to include each one of them when asking the questions. 

The game was a lot of fun, I want to list the questions and Ariauna's answers. Question #1- If you could meet anyone in the world, who would it be?  Ariauna said she would want to meet Edward, Bella or Alice from the Twilight series. (I know what other nine year old would want that, who is this girls parents that have let her see the Twilight movies?)  Question #2- If you could go anywhere in the world, where would you want to go and Ariauna said Disney World. Question #3- If you could have anything in the world what would you want and she said she would want her own Tree house and Question #4 was if you could be anyone in the world, who would you want to be and she chose Elsa (from the movie Frozen) so that she could freeze things. The other kids all had fun answers to the questions too, Austin would want to meet Olympic Water Polo player and Sadie would want to go to Candyland. Sadie and Jaxon also said they would like to meet Goofy so they might get part of their wish granted too. Who knows!  The game was a lot of fun. When the game was over then they handed each one of us a little paper that had a place to put Ariauna's name and our name on them and there was a spot to put what our wish for Ariauna would be. I couldn't help but get teary eyed about what I would write. We took a few minutes and we all filled one out. Then they explained to us that when they were getting ready to build the building, they asked several kids where they would want to make their wish and almost all of the kids said they would want to request their wish in the top of a castle, or better yet in Repunzell's tower. So that is what they did, they built a tower like Rapunzel's inside their office building. Up at the very top of the tower is where the kids get to request their wish. Before we went over to the tower, they asked Ariauna to think long and hard what her final request would be. She told them Disney World and the lady wrote it on a special wishing paper and then they asked her if for some reason your doctor would not approve that request (because of a medical need or issue) then what would be her top 2nd choice and she said to meet the Twilight characters. They wrote that on the list too and then told Ariauna to roll it up and they gave her a metal tube to put it in. 

Then was the moment Ariauna had been waiting for. She got to take her special key that came in the mail and find the door that it would open.

Her magical key that came in the mail fit just perfectly to the wishing room. Inside there was a beautiful waterfall, with soft relaxing music playing and the lights changed colors just like her rainbow lights in the BMT unit at the hospital. It was beautiful and peaceful. We all got invited in and then they closed the door. Meg explained to Ariauna about the wishing room and that it was a place for her to have a wish come true. 

Then she explained that each one of us would go around the room and take a turn reading Ariauna what our wish was to her. Meg started and then it just went around the circle,each one taking a minute to tell Ariauna what they wish for her.

I took a picture of everyone's wish for Ariauna, it was very special to listen to everyone tell Ariauna there wish. As a mom it meant a lot to me to hear each one of the kids tell Ariauna what they wish for her. Even little Jaxon drew a picture of "Olaf" from the movie Frozen and then when it was his turn he told Ariauna that he wished for her to have a snowman song. He loves the "Do you want to build a snowman" song from the Frozen movie. I was already teary listening to everyone else's wishes to her and then it got to me. I couldn't help but break down. My biggest wish for Ariauna is that she never would have been diagnosed with Fanconi Anemia and I told her that. I sobbed as I told her how much I loved her and that I wish she never would have been diagnosed with this disease, but that since she has, I would just wish her a long, healthy and happy life. What more could I ask for?  For her to live as long as she can, and to be healthy and happy in the mean time.

 Then it was time for Ariauna to give her wish to the Wizzard. Meg actually told Ariauna that she needed to follow the lights on the floor. It lead her over to find the top of the Wizzard's hat where she put the metal tube inside and then the lights led her back around to put it on top of the rest of the Wizzard's hat.

This evening was beautiful, it was again another moment for us to focus on Ariauna, and yet to focus on what our family has been through too. This journey has not just been about Ariauna, each one of the kids has had a hard time in their own way. What an amazing company that not only wants to grant what the child with this medical needs wants, but they also recognize each of the other kids and that their lives have also been ruffled too. During this journey our family has been through so much and numerous people have done things for our family. Many of the things that have been done for our family have been hard to accept as I have always been one to do things myself and not to ask for help. This wish is also something hard for me to accept. I know with out a shadow of a doubt that Ariauna deserves this wish. She has been through so much this last year, but I do not feel like I deserve to have someone or a non-profit company providing this for our family. But the letter we received from them was so beautiful and talks about how so many people feel helpless in times of need and feel like they do not know what to do. They explain so well that our accepting this wish is our families way of letting others in our community and in our state in some small way say they are sorry for what we have been through and for what our journey is. It was a beautiful letter, and I cried the whole time I was reading it. To end our evening we got some fun pictures of our family and a few with our volunteer wish granters inside the wishing room as well as a few at the bottom of the Wishing Tower. 

 

 

 

 

 

 

The next step of the wish is to get approval from Ariauna's Bone Marrow Transplant doctor and once that is given they will start working on making the wish happen. In the meantime, Ariauna has been accepted into the Make A Wish family and will be invited to numerous Make A Wish activities for the next five years with the first one being the upcoming Easter Egg Hunt. We are so very grateful to be a part of the Make A Wish family and already feel of the love and support from the three wonderful people we met through Make A Wish tonight. Thank you Make A Wish for a beautiful and fun evening.